I am learning to garden with Ramsay Hunt Syndrome and coping with the madness of this affliction. I use to think nothing of gardening all day long happily hauling 50lb bags of soil or manure. I use only the best ingredients. Up until 4 months ago, I had 4 major clients that I loved doing their displays and home arrangements. I can no longer work for more than 15 minutes at the time. In fact, my brain is sick from this affliction and completing a thought can be impossible. I have cried a bucket of tears over this mess. I love to write….write about all sorts of things…..and now it’s very hard. My arms don’t want to cooperate and neither does my brain. Why? what happened?
If you had chicken pox as a kid then the virus lays dormant in your system until a particular stress causes it to reactivate when you are around 50ish. That’s when your resistance runs out from when you first had it. Getting the booster at 50 will lessen your second bout of this virus but I did not get the booster cause no one told me to.
Along came a real stressful time in my life 4 months ago and the chicken pox virus reactivated in the nerves of my face. If the virus activates in other parts of your body it’s called shingles but when it activates in the nerves of your face it’s called Ramsay Hunt Syndrome…RHS. RHS is extremely painful causing deep ear and jaw pain. It can cause sores around and in the ear or inside the mouth. I had sores in the mouth. The sores ran along the chew line and on the right side.
On August 8th, the worst pain you can imagine began way deep in my ear and jaw followed by total face paralysis on the right side. The full paralysis lasted two months. I was shopping and felt my tongue go numb and went straight to my dr. She said my blood pressure was sky high and sent me to the emergency room where they ran bloodwork, cat scan, and mri. Everything came out ok except I told the dr my face felt numb. He said I was just anxious but I insisted something was wrong so to appease me……he sent me home with antivirals and steroids in case I was coming down with Bells Palsy.
The next morning after the ER visit….I woke up with a paralyzed face and in so much pain I was vomiting. I called my family dr and she got me in asap. She said I was on the right meds for Bells Palsy and sent me home with pain meds.
After a week, I wasn’t getting better and a dear sweet neighbor who worked for a neurosurgeon became concerned that I wasn’t getting better so she called my husband to discuss me seeing a neurologist. I owe her a lot for paying attention to how I was doing and insisting to my husband to get me further treatment. She helped us get an appointment with the top neurologist in the area and that dr knew right away that I have Ramsay Hunt Syndrome. He also said I was not responding to the antiviral I was given so started me on another which did work after two refills.
Dr. Hill said…girl….you got a long road ahead of you but we will fight this together. He said you have a bad case and it’s going to take lots of steroids and antivirals to get you through. It’s now been 4months and there have been some ugly complications which have greatly altered my life and that of my family—and especially my gardening career. I am weak, slow thinking, and pain has persisted along with vertigo.
RHS attacks the nerve in your face that runs down past your ear…..across your cheek…and up around your eye. RHS attacked every bit of mine. Nerves only heal at 1 mm a day so think of this as at least 2 years but I know of others in their 11th year still with permanent damage. I will be on steroids, neurontin, topamax, and xanax for at least 2 years. Because of the nerve death I have a secondary complication that is very serious called Giant Cell Arteritis–GAC. GAC is death of the arteries in the afflicted area of the dead nerves. GAC caused decreased blood flow to my right eye and reduced the vision by 75%. They don’t think I’ll get that back. GAC also affects blood flow to your arms and legs. It’s a nightmare and just plain insane but my strong faith helps me meet each new day with hope and to God be the Glory.
GAC and RHS make you so tired, make you depressed, make you fight for life every day. The meds make you a crazy person. I am puffed up from the steroids something awful to the tune of 30 extra pounds. For 4 months, I have sat on my sofa and slept or roamed the internet looking at gardens. Thinking of how one gardens when they are recuperating from something that robs your energy. Not gardening is out of the question.
I know plenty of people who would help me garden but that would take the pleasure out for me. Honestly….I don’t know anyone who gardens like me. I’ve been told I’m an artist in the garden and that pleases me to no end.
So…..here I am…in the midst of being very sick…sleeping upwards of 16 hours a day…and using precious hours to plan gardening. Would you expect any less of me? My husband just rolls his eyes.
I have scaled back. The GAC and RHS make my arms and legs feel like jello after about 30 minutes of work…so I will really have to plan this wisely–and rest on my swing for long periods surveying the work as it grows….inch by inch. I have started a to-do list for my husband which starts in January. I will have him put down manure and compost in the planting areas—and the vegetable garden. He can do one area per month and that won’t aggravate him to death. He hates a long to-do list.
I am planting more variety this year……instead of planting whole flats of flowers…I will do smaller areas with a variety of six packs===a perennial or two here and there. I will have a raised bed vegetable garden out back. My yard is sloped so I’ll do hay bail gardening and make a big square or several small squares with three hay bails in the back and one in the front….cause that will make it even across the top. It will be fenced in with a screen door. Probably will have a top on it too. Last year the squirrels stole my tomatoes and took one bite just to be mean.
So….how does one garden while so sick? Well….you just plan and do what you can–and what you can’t……you just let it go……..just let it go……
The photo above is from the front garden display at June DeLugas Interiors in Clemmons, NC. I had to give up her gardens this year and that broke my heart. She was my very best client and is one of my greatest friends. Made me very sad.